The Ethics of Paediatric Research
1
BOOK REVIEWS DOI:10.1111/j.1651-2227.2010.02092.x The Ethics of Paediatric Research. Edited by Wendler David S. Oxford University Press, New York, N.Y., 2010. 320 pp, Hardcover, Price USD 39.90 ISBN: 978 0 19973008 7 In this interesting and provocative work, Wendler attempts to answer a central challenge of children’s research ethics: ‘‘…whether it can be ethically acceptable to expose children to research risks for the benefit of others’’. Research exposes individual children to actual or potential harms. The bene- fits accrue to others. What makes it acceptable to expose children to risks for the benefits of others? Normally those responsible for children are charged with acting in the child’s interests. Whereas the involvement of adults in research is justified by the agreement of the individuals, this route is not available for incompetent children. Wendler uses the methods and approach of moral philosophy to jus- tify nonbeneficial research procedures on children. Wendler traces the long-standing debate back to Ram- say’s claim that ‘‘…research is justified only to the extent that it is in the interests of the participating children…’’. If so, nonbeneficial research with any risks at all cannot be in a child’s interests. One response to Ramsay’s challenge is the claim that although there may be no medical advantages in nonbeneficial research, other interests may be fulfilled through research (amongst which are the child’s moral development or education). However, as Wendler describes, this response is unavailable for very young chil- dren who will not be aware of their participation. Having considered the conditions needed for nonbenefi- cial paediatric research to be acceptable, Wendler responds to Ramsay’s challenge in a different way by claiming that children’s participation is justified by the fact of making a contribution to an important project. He argues that partici- pation in nonbeneficial paediatric research can promote children’s interests even when the child has neither chosen to take part nor is aware (at the time) that they are taking part. He argues that children (when older) may come to see that taking part in research was a good thing and so embrace their commitment, and also that a life in which one contributes to a valuable project is better, all things con- sidered, than a life in which such a contribution is absent. He defends this justification for children’s research against important challenges. Amongst the challenges is the response that what matters in a person’s life are only those aspects that the person has chosen or committed to (Wen- dler responds that the aspects that a person has chosen or committed to are more important, but are not the only ways in which things can be in a person’s interests). Another challenge is that if research participation was in a child’s interests, then this would justify the child’s participation in too much research, or in research projects that would pose more risks (Wendler’s response is that passive involvement in a valuable project is only a weak justification and will offer only limited support). A further challenge is that if research participation is in a person’s interests, this then jus- tifies some degree of compulsion to take part (Wendler argues against this). All in, this book is a valuable addition to the scanty litera- ture on research in children. It is not a ‘hands on guide’ meeting the needs of researchers with an ethics committee to satisfy, but a deeper attempt to explain how nonbeneficial procedures for research on children can ever be justified and as such is more satisfying than Ramsay’s solution for paediatric researchers to ‘‘…sin bravely’’. Paul Baines [email protected] DOI:10.1111/j.1651-2227.2010.02093.x Cytokines, Growth Mediators and Physical Activity in Children during Puberty. Edited by Jurima ¨e J, Hills AP, Jurima ¨e T.. S Karger AG, Basel, 2010. VIII+178 pp, Hard cover, 29 figs, 9 tables. Price: €158, USD 214. ISBN: 978 3 8055 9558 2. Acta Pædiatrica ISSN 0803–5253 314 ª2010 The Author/Acta Pædiatrica ª2010 Foundation Acta Pædiatrica 2011 100, p. 314
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Transcript of The Ethics of Paediatric Research
BOOK REVIEWS
DOI:10.1111/j.1651-2227.2010.02092.x
The Ethics of Paediatric Research. Edited by WendlerDavid S. Oxford University Press, New York, N.Y., 2010.320 pp, Hardcover, Price USD 39.90 ISBN: 978 019973008 7
In this interesting and provocative work, Wendler attemptsto answer a central challenge of children’s research ethics:‘‘…whether it can be ethically acceptable to expose childrento research risks for the benefit of others’’. Research exposesindividual children to actual or potential harms. The bene-fits accrue to others. What makes it acceptable to exposechildren to risks for the benefits of others? Normally thoseresponsible for children are charged with acting in thechild’s interests. Whereas the involvement of adults inresearch is justified by the agreement of the individuals, thisroute is not available for incompetent children. Wendleruses the methods and approach of moral philosophy to jus-tify nonbeneficial research procedures on children.
Wendler traces the long-standing debate back to Ram-say’s claim that ‘‘…research is justified only to the extentthat it is in the interests of the participating children…’’. Ifso, nonbeneficial research with any risks at all cannot be ina child’s interests. One response to Ramsay’s challenge isthe claim that although there may be no medical advantagesin nonbeneficial research, other interests may be fulfilledthrough research (amongst which are the child’s moraldevelopment or education). However, as Wendlerdescribes, this response is unavailable for very young chil-dren who will not be aware of their participation.
Having considered the conditions needed for nonbenefi-cial paediatric research to be acceptable, Wendler respondsto Ramsay’s challenge in a different way by claiming thatchildren’s participation is justified by the fact of making acontribution to an important project. He argues that partici-pation in nonbeneficial paediatric research can promotechildren’s interests even when the child has neither chosento take part nor is aware (at the time) that they are taking
part. He argues that children (when older) may come to seethat taking part in research was a good thing and soembrace their commitment, and also that a life in whichone contributes to a valuable project is better, all things con-sidered, than a life in which such a contribution is absent.
He defends this justification for children’s researchagainst important challenges. Amongst the challenges is theresponse that what matters in a person’s life are only thoseaspects that the person has chosen or committed to (Wen-dler responds that the aspects that a person has chosen orcommitted to are more important, but are not the only waysin which things can be in a person’s interests). Anotherchallenge is that if research participation was in a child’sinterests, then this would justify the child’s participation intoo much research, or in research projects that would posemore risks (Wendler’s response is that passive involvementin a valuable project is only a weak justification and willoffer only limited support). A further challenge is that ifresearch participation is in a person’s interests, this then jus-tifies some degree of compulsion to take part (Wendlerargues against this).
All in, this book is a valuable addition to the scanty litera-ture on research in children. It is not a ‘hands on guide’meeting the needs of researchers with an ethics committeeto satisfy, but a deeper attempt to explain how nonbeneficialprocedures for research on children can ever be justifiedand as such is more satisfying than Ramsay’s solution forpaediatric researchers to ‘‘…sin bravely’’.
Paul [email protected]
DOI:10.1111/j.1651-2227.2010.02093.x
Cytokines, Growth Mediators and Physical Activity inChildren during Puberty. Edited by Jurimae J, Hills AP,Jurimae T.. S Karger AG, Basel, 2010. VIII+178 pp, Hard cover,29 figs, 9 tables. Price: €158, USD 214. ISBN: 978 3 8055 9558 2.
Acta Pædiatrica ISSN 0803–5253
314 ª2010 The Author/Acta Pædiatrica ª2010 Foundation Acta Pædiatrica 2011 100, p. 314
